“There is no greater agony than bearing an untold story inside you.” -Maya Angelou
As the parent of a child with a learning disability, you know how difficult it is to effectively share your story with others in a way that will bring about true understanding and real change for your child. Frustration and a sense of helplessness can often get in the way of productive conversation and collaboration. However, keep in mind that your goal is to find and build a team of advocates for your child, both inside and outside the school, who can act as a microphone through which your child’s story can be amplified.
…find and build a team of advocates for your child, both inside and outside the school, who can act as a microphone through which your child’s story can be amplified.
One way you can help your child is to form deep connections with his or her teachers, administrators, and others who interact with your child. Just as you want them to hear and respect you, so you should hear and respect them. Most teachers want to assist and guide you and your child, so do your best to address them as an appreciated member of your child’s support team.
Also, be aware that teachers manage incredibly heavy workloads and are constantly multi-tasking to meet the needs of their students. They teach because they are passionate about children and want to see them succeed; however, it is easy to become overwhelmed with large class sizes and limited one-on-one time to spend with students.
Reading ability is a distributed along a continuum, like height and weight. Dyslexia in its most severe form is a learning disability, but children with dyslexia may or may not receive special education services. The tools provided below can help you successfully tell your story in such a way that your child’s school, teachers, and administrators will truly understand and appreciate what is necessary for your child to find success as a learner, for all children with dyslexia, whether they are receiving special or general education instruction.
- Create a Home Binder: Create a binder that includes all evaluations, report cards, progress reports throughout your child’s education, accommodations that have been effective, and Individualized Education Program (IEP) or 504 plan. Visit the website of your state’s department of education and print any school resources, procedures, or timelines that will help keep you on track.
- Compile a School Binder: Each year, create a school binder to give to your child’s teacher(s). Include simple educational timelines, current progress reports, and recent tests; write out your child’s story; list any accommodations that have been effective (IEP or 504 plan). This information should be updated yearly and provided in an easy-to-read format.
- Personalized Data Binder: Ask your school if they use personalized data binders, or anything similar. Data binders are fairly new, but if in use by the school it should be unique, personalized, and related to the student goals and objectives.
- Never Apologize: Break your pattern of apologizing every time you ask for something you think is over and above what is typical. Instead, make your request and share your concerns with a smile.
- Learn Everything You Can about Your Child’s Instructional Needs. The bottom line is that both teachers and parents need to work together to ensure that students have the ability to successfully learn; you cannot expect your child’s teacher to understand your fears and educational concerns if you do not clearly explain your story, and also try to empathize with theirs. By understanding the special education process, you are arming yourself with the knowledge needed to support your child effectively, efficiently, and as part of a team.
Pushing Back: What to Say When Your School Gets It Wrong
One of the most frustrating aspects of establishing an effective IEP is the fact that your school may not understand the law, dyslexia, or its remediation. Here are some common statements made by school personnel and suggestions for how to respond:
“We don’t recognize dyslexia.”
This statement can appear in many forms. “Dyslexia is an old term.” “Dyslexia does not exist.” “We don’t use that term.” Here is what you must remember. Your school is mandated by law to recognize dyslexia. Under the Individuals with Disabilities Education Act of 2004 (IDEA), a child with a disability is entitled to a “free appropriate education.” IDEA defines “a child with disability” to include children with “specific learning disabilities.” “Specific learning disabilities” are specifically defined to include dyslexia. The specific citation for this language is 20 USC § 1401(30)(B). The word “dyslexia” has been in the special education statute since 1975.
Parent Response to School: “I appreciate your opinion on this issue, but it is really not a matter for us to decide. The Individuals with Disabilities Education Act says that children with specific learning disabilities are entitled to an education appropriate to their needs and dyslexia is specifically listed as one of the conditions included in the definition of specific learning disabilities. So while there may be different opinions on this issue, one of the reasons we are meeting today is because IDEA provides a process for addressing disabilities, and dyslexia is one of the disabilities specifically listed in the Act.”
“Let’s watch the problem. These things get better with time.”
Schools will often seek to delay special services by suggesting that you “watch the problem.” They might say things like “All children develop at different rates” or “Every child will learn to read eventually.” If your child has been assessed to have dyslexia, you can refer them to the International Dyslexia Association and its position on the importance of early remediation.
Parent to School: “According to The International Dyslexia Association, an organization of educators, reading researchers, and professionals in the remediation of dyslexia, early intervention is the best strategy for teaching a dyslexic child to read. Research shows that delaying the intervention until the second or third grade is likely to have adverse, long term consequences by reducing the ultimate reading proficiency that a child might have otherwise achieved.”
“Our approach to teaching reading will work fine for your child.”
One of the most difficult tasks in addressing reading issues for a dyslexic child is that many schools do not have teachers appropriately trained to teach your child to read. A child with dyslexia has a deficit in “phonemic awareness.” That means that the child will have more difficulty separating the sounds in a word. Successful reading instruction for a child with dyslexia requires intensive, structured, phonics-based reading instruction that includes phonemic awareness or the ability to segment words into their component sounds. Click here to download and share a copy of IDA’s fact sheet Effective Reading Instruction.
Parent to School: “According to the International Dyslexia Association, successfully teaching reading to a child with dyslexia requires specific approaches to reading instruction that emphasizes the structure of language, including the phonics, the writing system, the sentence structure, and the semantics. These teaching strategies are often referred to as the Orton-Gillingham method, multisensory reading instruction, or Structured Literacy that includes phonemic awareness or the ability to segment words into their component sounds.”
“We already have too many students in special education, and we just don’t have the budget to include your child this semester.”
It is true that special education can be expensive and schools face legal requirements that are not adequately funded. But under the law, a child with dyslexia is entitled to an IEP and accommodations.
Parent to School: “I know you face budget issues in delivering IEPs. But under IDEA, if my child has a qualifying disability, we are entitled to an IEP that addresses her needs. This meeting is not about the cost of these services. This meeting is to establish the programming that will work for our child.”
“Your child is really smart and is doing well for a child with dyslexia.”
If your child is performing well in school, despite dyslexia, it will be difficult to obtain an IEP. Nevertheless, good grades do not preclude giving a child special education and related services that address a child’s specific needs.
Parent to School: “Thank you for the compliment but the issue is not whether my child is keeping up. The issue is getting my child to perform at grade level or in accordance with what would be expected of someone with his or her IQ. In 2012, the U.S. Department of Education issued a “Dear Colleague” letter saying that good grades do not prevent a child from having a disability and receiving accommodations under the IDEA. So how can we determine programming that will allow my child to perform to the level of her intellectual abilities?”
“Given your child’s disabilities, you are going to have to lower your expectations.”
The question is not whether your child has a disability. The purpose of the meeting is to determine what special education and related services will help your child perform at grade level or in accordance with what would be expected of someone with his or her IQ (children with disabilities can receive accommodations/modifications to be in gifted or accelerated classes).
Parent to School: “I understand my child has a disability. We all know that and that is why we are here. But until we have appropriate special education and related services in place we won’t really know what her level of performance will be. I am committed to helping her do as well as she can.”
“If we give your child accommodations, she won’t learn to read like a normal student.”
Many schools resist assistive technologies such as text-to-speech readers.
Parent to School: “The goal here is learning and literacy, even if it is not in the traditional form. If my child had a visual impairment, you would not oppose using Braille. How can we work together so that my child can access written content more effectively, learn her lessons, and become a more successful student?”
“We can’t set a precedent.”
Some schools will claim that providing your child with services provided by law will “establish a precedent,” meaning that they will have to give the same accommodations to other students. If your child is entitled to an IEP and special services and the school system believes it would become a “precedent” to provide them, that position suggests that the school policy as a whole is not complying with the requirements of the law. The possibility of future programming changes for other students should not preclude the school system from acting upon the services your child is currently entitled to receive.
Parent to School: “The question is whether my child is entitled to an IEP and appropriate special education under the law, not whether you have provided them in the past or want to provide them in the future. My child has dyslexia. Dyslexia is covered under the IDEA. So our discussion needs to focus on what is appropriate programming to help my child succeed. That question applies to my child or any other child in the same situation. Not whether you have provided those services in the past.”
A committee of parents of children with dyslexia has been working with the International Dyslexia Association (IDA) to address issues of concern raised by a recent IDA survey.
IDA thanks everyone involved in the important work of this committee, as well as Mary Jo O’Neill, M.Ed., teacher, outreach coordinator, advocate, and President of IDA of Northern Ohio, and Decoding Dyslexia for their contributions to this content. Decoding Dyslexia is a grassroots parents movement with chapters in 50 states and 4 provinces in Canada, dedicated to dyslexia awareness, empowering families, and informing policy-makers of best practices.
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